By admin (Admin) on Tuesday, October 10, 2000 - 08:53 am:
Posted by gary krane on September 04, 2000 at 22:23:38:
To whom it may concern: I don't have the time to research all the references on the various therapies (visodyne solution-laser therapy, proton therapy, surgical moving of the retina, etc.) I need to decide in next few days what to do for my 93yearold mom in Minneapolis. Her AMD got markedly worse about 3 weeks ago, so that she can no longe dial phone or operate microwave, and can only read with magnifier and lite with difficulty. Please email, but if you can call and leave a number that would be even better: 1 800 324 7637 (rings in Los Angeles; so avoid calls later than 11pm PCT). r reach me at 612 929 5452 (in and out). Best would be Tuesday morning before 10:45am or around 6-7pm maybe. Or Wednesday maybe around 1pm. I will be immensely grateful.Happy to donate to your favorite cause, etc. (I think you will like some of my causes as well.)--gary krane
Posted by Thomas McHale Jr. on September 05, 2000 at 15:55:24:
In Reply to: urgent:advice need on best therapy for wet amd posted by gary krane on September 04, 2000 at 22:23:38:
My Dad had the PDT/Visudyne treatment with great success. Scroll down the bullitin Board for the posted message "PDT/Visudyne A Success-Tom McHale" for the particulars. Good Luck with your Mom.
Tom McHale
Posted by Russ on September 05, 2000 at 08:54:33:
In Reply to: urgent:advice need on best therapy for wet amd posted by gary krane on September 04, 2000 at 22:23:38:
To whom it may concern: I don't have the time to research all the references on the various therapies (visodyne solution-laser therapy, proton therapy, surgical moving of the retina, etc.) I need to decide in next few days what to do for my 93yearold mom in Minneapolis. Her AMD got markedly worse about 3 weeks ago, so that she can no longe dial phone or operate microwave, and can only read with magnifier and lite with difficulty. Please email, but if you can call and leave a number that would be even better: 1 800 324 7637 (rings in Los Angeles; so avoid calls later than 11pm PCT). Or reach me at 612 929 5452 (in and out). Best would be Tuesday morning before 10:45am or around 6-7pm maybe. Or Wednesday maybe around 1pm. I will be immensely grateful.Happy to donate to your favorite cause, etc. (I think you will like some of my causes as well.)--gary krane It is hard for people who don't know your mother or her condition to offer advice on what thearpy/treatment she should have for her macular degeneration. Plus, she is 93 years old. What other health problems does she have? You and she should sit down with her eye doctor and a good ophthalmologist and discuss her treatment options. I wouldn't suggest that you take advice as to your mother's wet macular degeneration treatment from strangers over the Internet. A good eye care professional who has seen her and examined her would be your best course of action. Wishing the best to you and your mother. Your friend, Russ.

By GaryvonR on Wednesday, February 28, 2001 - 03:25 am:

I was just told that I have "early" wet MD.
I am 68 and otherwise, except for being over
weight, in good health. My mother-in-law has
advanced MD at 92 but still can live alone and
be quite independent.

I was also told I have "early stage" cataracts.
Double vision glasses were prescribed.

Should I seek a second opinion and what should
I do with a doctor (MD) that tells me to just
"watch the dot", report any change and come
back to see him in 3 months.

Driving is no longer a joy and this computer
screen is also beginning to be a chore to read.

Thanks and God Bless. Gary

By m.j.williams on Wednesday, February 28, 2001 - 12:40 pm:

Is there any research into the possibility of angiogenesis inhibitors to prevent macular degeneration?

By Robin on Wednesday, December 19, 2001 - 01:07 am:

My mom was just diagnosed with wet macular degeneration. She is to undergo the first of 12 visudyne treatments in 4 days. She is really scared and I am skeptical. I have so many questions and I need to know if anyone has had this proceedure done and what was it like? What was the prognosis after treatment and what was the outcome of the proceedure? My mom is 61 and her passion in life is to read books. I am so sad for her and I don't want her to go through with this if it is not going to help her. Please.....if anyone has any info, please e-mail me ASAP! Thanks.........Robin

By ruth meyers on Saturday, December 29, 2001 - 08:17 pm:

Robin-I wish your Mom good luck. I had my first round of visudine therapy (PDT) on 12/20/01. I was also very fearful, but felt I didn't have too many options. All I'm hoping for is that the treatment stops the rapid progression of the disease. The Dr. said I may need a couple more treatments within a few months. He never said anything like 12 more! That's scary. I have to say that although the affected eye isn't fine, it seems that more light is coming in than before. I feel as if I'm looking through water. Good Luck.

By iola dudley on Wednesday, January 02, 2002 - 10:16 pm:

Just found out I have wet macular degeneration. I can still see well. How long do I have before I go blind? Age 69, doing fine now.

By Gail Sweeney on Thursday, February 07, 2002 - 01:38 pm:

To GaryVonR: go get your wet AMD treated (photodynamic therapy, probably). Your eyes are bleeding, and you need to get it to stop, or your vision will just deteriorate. Ask the doctor what therapy you are eligable for, and/or see another doctor.

To mjwilliams: yes, there is, but it hasn't been approved yet. See if there are any studies you can sign up for. Try contacting The Wilmer Eye Institute at John Hopkins University, The Schepens Eye Institute, or the Baylor College of Medicine.

As for PDT treatements: they are just to temporarily stop the bleeding. They don't cure anything. Good idea, though, since otherwise your vision will deteriorate more rapidly.

to iola dudley: have you looked into if you are eligable for any treatments? If you can get the bleeding stopped, then your vision will deteriorate much slower.

By Kathi Lengel on Saturday, February 16, 2002 - 08:41 pm:

My dad (83) was just diagnosed with Wet AMD - and he's volunteered for experimental treatment at the university of VT - is his cumidin making the condition worse or causing it? I've ordered a couple of books from Amazon and am seeking any other info that can be provided... Kathi

By Suzanne McLean on Tuesday, July 01, 2003 - 11:43 pm:

I have a 46 yr old step-daughter who was diagnosed with some kind of Mac Degen, but has not followed up yet (didn't like the doctor who supposedly told her she would be blind in 5 yrs.) She has two fuzzy black spots in her vision, on each eye. She is a single mom with low income and no insurance. We live near Stanford University - could she get low cost medical care through the eye clinic there? I would welcome any other advice you want to share. Thanks so much. Suzanne

By Jeanne Linley on Friday, July 25, 2003 - 12:10 pm:

I was just diagnosed with Macular Degeneration. I am 74. My Ophthamologist just made a 6 month check-up appointment and sent me home. I asked him is there anything that can be done to help me and the only thing he briefly mentioned was "take eye vitamins". I searched on the internet and found out what "eye vitamins" meant! I bought some Lutein at the drug store and am already taking Vitamin A, B, C, D & E and increased my vitamin dosage. What else should I be doing? I have HMO Blue Cross-Blue Shield Health Options health insurance. I live near Bascom Palmer Eye Institute in Miami, but I'm not sure my insurance would cover that hospital. You have to go to the doctors in your plan. What should I do next?

By Barbara G. Ahearn on Tuesday, June 15, 2004 - 04:24 pm:

Those with dry AMD, please read about the AREDS study that determined the dosages in Ocuvite PreserVision (Bausch&Lomb) are necessary to preserve vision.

I have wet in the other eye and have undergone one laser surgery with Visudyne injection. Does anyone have extended results?

Also, Blue Cross/Blue Shield of Arizona is checking their status for coverage of the rather expensive Visudyne drug. Anyone have some information on coverage in Arizona?

Thanks

I'm trying to find

By Rudy Papa on Wednesday, April 13, 2005 - 03:41 pm:

I have a close friend who has macular degeneration {wet AND dry - Isn't he lucky}.

He can't afford Macugen treatments 'cause MediCARE doesn't seem to CARE for us elderly.

He's given up!!!!!!!!!!

I'm researching his options, but I'm not SUCCEEDING.

Can AMDF help point me in the right direction, SO THAT I MAY HELP HIM?????????????

By Mary Dell Martin on Thursday, October 13, 2005 - 12:33 am:

According to an article in the AARP Bulletin, Oct. 2005, "Macugen injections, given every six weeks, cost $995 a dose, and are covered by Medicare and some insurance companies." The article also says that the drugmakers are setting up programs to help people on limited incomes pay for the medications.

I hope this helps! Tell your friend to NEVER GIVE UP! My dad, 88, kept his Macular Degeneration slowed down until about a year ago when it seemed to get worse quickly, in spite of the laser treatments he had been having from time to time. He had to give up driving then.

Now he is excited about Macugen and also Lucentis, which is not yet approved by the FDA but probably will be by the end of 2006, according to the article.

By pat hatfield on Friday, January 20, 2006 - 09:39 pm:

My 88 year old mother has WMD. she can't see at all in one eye and limited sight in the other eye.she is taking macugen injections every six weeks, but it is not helping. her doctor told us today that there is a drug that they are now using in cancer treatments that has an ingredient or drug in it that will actually imrove the sight of people with MD, but it has only been approved for the treatment of cancer patients. the drug companies are wanting to take that drug out and produce it for MD under another name and charge around 1200.00 to 4000.00 per dose. the drug used for cancer has the same medicine in it and is only around 10.00 a dose. the drug or ingredient will be the same except for the price and can improve sight instead of just slowing the degeneration process. since this has not been approved for use to treat MD. the drug manufacturers want to haul in the money for themselves instead of putting something out and make it available and affordable to (mostly elderly) people which will improve their eyesight.
I don't remember the name of the new drug but I think the public should be aware of this information. If anyone out there has any information about this please post it. There will be a conference held on Feb. 2nd. and 3rd. where this subject will be brought. I don't know what city the conference will be held in.

By Juanita Morton on Wednesday, February 15, 2006 - 06:55 pm:

Has anyone out there tried microacupuncture for macular degeneration -- there is a clinic in Arkansas which may or may not be "snake Oil", but they have all kinds of testimonials on their web site - they will NOT, however, give information on a similar clinic in San Diego which supposedly gives the same treatments -